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charba1

Pancreas and Kidney transplant - share experiences

Posted by @charba1 in Transplants, Jul 23, 2011

Does anyone know 

Tags: transplants

sophiadelgado

Posted by @sophiadelgado, May 17, 2014

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

2011panc

Posted by @2011panc, Nov 14, 2016

I received a pancreas only in 2011. I had been on the transplant list for about 6 months and had 12 hours to get to the hospital. We live 10 hours away, but it was the middle of winter with an icy storm between us and the hospital in Rochester, MN. We had made contact with a charter flight that was able to meet us at the local airport and fly us to Rochester, landing just before the airport was shut down due to the storm. Then we had about 4 hours to wait before we could check into the hospital and were not allowed to wait at the hospital. We stayed across the street at the Kahler. During my hospitalization my caregiver moved into the Gift of Life Transplant House, which we have been using ever since when it is available to us. If we had not lived close enough, the Transplant House would have been available for us to wait until a pancreas became available. The first year was horrendous, as other issues that had been hidden by long-term diabetes came to light. I was hospitalized 9 times in the first 12 months, lost my independence and ended up in a wheelchair. I could not drive, cook or clean my house and had to depend on other people to take care of everything. Fortunately things began coming together and I am now back to driving and only using a wheelchair for long distances or where there is no seating available. I am now stable and my goal is to stay so for as long as possible. At the time of my pancreas transplant I was informed that I would probably need a kidney transplant in 3 years. Sure enough, at my 3rd annual exam I was referred to the renal department to be assessed and followed regarding a kidney transplant. Thank God for that! We discovered that oxilates were the primary cause of the damage to my kidneys. I began a low oxalate diet and have since been able to improve my kidney function enough to be removed from the transplant list. We also discovered that I cannot assimilate fats and I have also added a low fat diet to my treatment plan. Despite the rough first year, this has been a wonderful experience for me. I have discovered underlying issues that are now being treated and am greatly improved. I no longer take insulin or need to check my blood sugars 4-6 times a day, and my blood sugars are stable with an a1c of around 4.7.

rosemarya

Posted by @rosemarya, Nov 14, 2016

@2011panc Welcome to Connect. I'm happy that you found us. Thank you for sharing your amazing and dramatic story of your arrival during the storm. I'm happy that you are doing well after that rollercoaster first year. I am short on time right now, but I had to welcome you, a fellow transplant recipient - and from Mayo Rochester, too!
I'll be back in touch soon.
In the mean time check out the Living Life after your Transplant discussion for some helpful hints. I'll bet you have some that you could add, too.
Rosemary liver/kidney 2009

colleenyoung

Posted by @colleenyoung, Nov 14, 2016

Hi @2011panc. I'd like to add my welcome too. Here is the link to the discussion Rosemary refers to

https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

It would be great to have you add to that discussion.

coastalgirl

Posted by @coastalgirl, Nov 15, 2016

You are amazing!! What a struggle you have been through yet you are pushing forward and remain positive. This will be the perfect platform for you to inspire others!! Congratulations on your perseverance, courage, and love of life!! Happy Thanksgiving:))

2011panc

Posted by @2011panc, Nov 15, 2016

Thank you all for your welcome and kind remarks. Also thank you for the referral to the Living after Transplant discussion. I don't really hear about the mental, emotional and spiritual challenges recipients (or caregivers) face, so I am hoping for continued support in these areas from this group.

rosemarya

Posted by @rosemarya, Nov 15, 2016

@2011panc I am happy that you have found us. We transplant recipients and our caregivers) do have to stick together and to support each other! You have just given me an idea for a new transplant discussion! I hope you will join me there! Rosemary

rosemarya

Posted by @rosemarya, Nov 15, 2016

@2011panc, How did you find our Connect discussion? Rosemary

2011panc

Posted by @2011panc, Nov 16, 2016

I had been searching online, but I only found technical and caregiver support groups. I asked at my last annual exams if they were aware of any talk/discussion groups for recipients and they sent me this link.

rosemarya

Posted by @rosemarya, May 18, 2014

Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one's wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Rosemary

sophiadelgado

Posted by @sophiadelgado, May 18, 2014

Thanks so much for your reply my head is just spining with questions.
The doctors told me i might wait up fo one year im just ancious and nervous
cant believe this is happening but. One day i will look back and remembee
this life changing expierience

rosemarya

Posted by @rosemarya, May 18, 2014

I understand what you mean about your head spinning! You sound like you have a good positive attitude, this will help you a lot. You might consider keeping a journal to keep record events/dates that occur during your waiting and eventual transplant. Years from now, it will be interesting to review. It is amazing how much you will forget! I kept one and I am happy I did.

sophiadelgado

Posted by @sophiadelgado, May 29, 2014

How long did u wait

rosemarya

Posted by @rosemarya, May 29, 2014

I waited 5 1/2 months after I was listed. Waiting times are different for everyone. Organs are very carefully matched to a recipient. So the waiting time is needed for the best organ to become available for you that "matches" you.
I have met people who have waited less time than me, and I have met people who have waited more time than me.
Be patient, and trust that one will be available when you need it.

sandras

Posted by @sandras, Jan 28, 2016

I am a pancrease transplant receipant any one else on here that has this kind of transplant?

2011panc

Posted by @2011panc, Nov 16, 2016

I received a pancreas in 2011 and just found this group this week.

colleenyoung

Posted by @colleenyoung, Jan 29, 2016

Hi @sandras,
Welcome to Connect. I'm glad you found us. I moved your message to this thread because I'd like to introduce you to @sophiadelgado and @rosemarya. See their messages about transplant above.

Sandras, when did you have your transplant? How is the recovery going?

Colleen
Connect Community Director

colleenyoung

Posted by @colleenyoung, Jan 29, 2016

I'd also like to tag @bszychow, who posted last Sept that she was on the pancreas transplant list https://connect.mayoclinic.org/discussion/i-recently-started-on-the-insulin-pump-after-taking-shots-for-over/

@bszychow and @sophiadelgado - How are you doing? We'd love to get an update from you both.

sophiadelgado

Posted by @sophiadelgado, Jan 29, 2016

I have transfered to Seattle UW hospital since it is in my region and I am
still waiting

colleenyoung

Posted by @colleenyoung, Jan 29, 2016

Welcome back @sophiadelgado. How frustrating (not sure which adjective to use here) it must be to wait so long. Did you see this post about getting on multiple transplant lists?

@sandras How long did you have to wait?

sandras

Posted by @sandras, Jan 29, 2016

I had to wait 1 year to the date.

colleenyoung

Posted by @colleenyoung, Jan 31, 2016

What that year must've been like @sandras. I cannot imagine. But I bet you can imagine how @sophiadelgado must feel. She's been waiting over a year now.

Sophia, I forgot to add the link to the message with information about being on multiple lists. Here you go: https://connect.mayoclinic.org/discussion/i-have-been-added-to-the-transplant-list-for-a-liver-at/

Sandras, how long ago did you have your transplant and how is the recovery going? How are you doing today?

sandras

Posted by @sandras, Jan 31, 2016

I had my transplant Dec 21, 2013 afer a long long road to recover (i regected 2 times and had many complications) I am now now longer diebattic,free of insuline. It is a miracle that i made it! But i feel so very grateful especially to my doner and his family for giving me a second chance! God bless!

bszychow

Posted by @bszychow, Jan 31, 2016

Hi All, I have only been on the list since 9-11-2015. Got my first call in less than 2 months, but died waiting on a plain. 2 other calls with an EBV Pos. but I am EBV Neg. I am slowly going crazy. I don't know what a year or more would be like?

sandras

Posted by @sandras, Jan 31, 2016

For a pancrease transplant? Are you a diebettic type 1?

sandras

Posted by @sandras, Jan 31, 2016

You said "but died being on a plain". What do that mean?

bszychow

Posted by @bszychow, Feb 1, 2016

Yes I am type 1 for 40 years, and the pancreas was on a commercial flight that got held up some ware.
I was waiting for it being prepped but its usable time had passed and was not there yet. so it was cancelled.

sandras

Posted by @sandras, Feb 1, 2016

Oh so sorry. To. Here. That

sandras

Posted by @sandras, Feb 2, 2016

Hi, I waited for a year and also had many calls. It is frustrating but hang
in there! I personally know what is is like to wait.

colleenyoung

Posted by @colleenyoung, Aug 12, 2016

Hi @bszychow @sandras @sophiadelgado,
It's been a while since we've heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?

sophiadelgado

Posted by @sophiadelgado, Aug 12, 2016

Well about a year ago I lost my job and medical insurance so I was placed
on hold for transplant. I was then referred to the university of Washington
for Transplant since this is in my region. I have been on hold ever since
fighting back and forth with medical insurance I'm to the point now where I
try not to think about Transplant sounds two stressful and everyday life
has its own issues to deal with. But since chosen to not worry so much
about and just living life my kidney function has gone up to 26 percent so
who knows I might not even need one when it's all said and done I'm just
trying to enjoy everything and not street so much. I wish the best of luck
to everyone dealing with kidney issues. PRAY FIRST

Scott likes this
bszychow

Posted by @bszychow, Aug 12, 2016

welcome back.

Glad to know there is some good news in all that mess. I have been through so many jobs and in and out of insurance. one thing I did find was biofeedback in witch I can control some of my body through my mind. no joke it works. now on the list for a year, still waiting. Hope more things start going better for you. keep that positive attitude, it is a big help. Your in my thoughts.

rosemarya

Posted by @rosemarya, Aug 14, 2016

@bszychow , time does pass slowly while waiting. And, as if waiting alone is not difficult enough, it sounds like you have endured more than your share of trouble. It also sounds like you have a positive and optimistic outlook. That will help carry you forward. I am happy for you that the biofeedback has been working for you. Our minds and our bodies are capable of amazing accomplishments! Would you be comfortable to share a little about how you used biofeedback? Rosemary

colleenyoung

Posted by @colleenyoung, Aug 12, 2016

So good to hear from you @sophiadelgado. Sorry that the news isn't better re your transplant wait. But I have to congratulate you on your attitude. Wow! Mind over matter and increasing your liver function. Well done.

@bszychow and @rosemarya will you join me in welcoming Sophia back?

rosemarya

Posted by @rosemarya, Aug 14, 2016

@sophiadelgado, In 2014, I replied to you that I "admired your positive attitude". That statement goes double, and even triple today as I am reading your post. I am sorry that you have been facing so many detours of the medical insurance system. It is remarkable that in the midst of this mess, that you have been able to focus on living life, and that your kidney function has actually gone up! Are you on dialysis? My experience was pretty much an emergency event, so I do not have any background in what %function makes dialysis necessary. I want you to know you will be in my prayers. Rosemary

sophiadelgado

Posted by @sophiadelgado, Aug 14, 2016

---------- Forwarded message ---------

colleenyoung

Posted by @colleenyoung, Aug 17, 2016

Hi Sophia - it looks like you tired to post a message in response to Rosemary, but it is blank. Can you please try again?
So glad to hear from you again!

ters1993

Posted by @ters1993, Aug 14, 2016

My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

colleenyoung

Posted by @colleenyoung, Aug 17, 2016

Hi @ters1993, welcome to Connect.
Wow, so great to hear about the longevity of your husband's transplants. We have a few members who are long-time transplant recipients. @rosemarya, I believe you are 7 years and counting, right? @dglass4040 was your transplant 2011?

I'd love to move this conversation to the discussion called Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/ Will you join me there?

rosemarya

Posted by @rosemarya, Aug 18, 2016

@ters1993, Welcome to Mayo Connect! And thank you for entering this discussion and sharing your longevity of your husband's transplant. I am a 7 year liver/kidney transplant. People like your husband are an inspiration for me; and especially for those who are on the waiting list to receive an organ. Thank you for sharing hope with us. Rosemary

rosemarya

Posted by @rosemarya, Aug 18, 2016

@ters1993, I know of some people who share your longevity with an organ transplant. I am going to try to notify them and ask them to enter this discussion. Before my transplant in 2009, I did not know anyone who even had a transplant. Now I find friends, and friends of friends who have transplanted or who know someone. If anyone out there can add anything about longevity (any organ), please join us. We welcome you to share in this discussion. Rosemary (liver/kidney 2009) enjoying 7 wonderful years!

coastalgirl

Posted by @coastalgirl, Nov 15, 2016

I am Joan and I am 6.5 yrs. post kidney transplant and going strong!! So thankful to have this group to share faith, hope, healing and questions with!!
Happy Thanksgiving to all!

2011panc

Posted by @2011panc, Nov 16, 2016

I am so relieved to be able to stop counting carbs, counting calories, measuring and recording blood sugars, calculalting/measuring and administering insulin, that counting anything (such as the number of years since my transplant) is of no interest to me. I personally think all diabetics that are trying their hardest to remain healthy must become walking, talking computers. My focus now is stability. I will do the best the longest if I can keep all my levels and test results stable. This also includes stability in my diet and activity. There was so much chaos in my life before the transplant, I am just grateful for and enjoying the stability. Kinda funny, right?

rosemarya

Posted by @rosemarya, Nov 16, 2016

@2011panc Your description of the chaotic life before transplant and the eventual stability are the reality of life for many of us. I am happy that you have joined our discussion. I look forward to hearing more from you. And I look forward to hearing from others who have had similar or non-similar experiences. We have a lot to learn from each other, and to teach each other.
Rosemary

rosemarya

Posted by @rosemarya, Mon, Jan 16 at 9:48am CST

Hi, @coastalgirl. We have not heard from you for a while. I want you to know that I'm thinking about you. I sincerely hope that you are doing okay. Rosemary

sandras

Posted by @sandras, Nov 15, 2016

Hi this is Sandra pancrease transplant recipient. God bless and blessed are the fortunite

rosemarya

Posted by @rosemarya, Nov 15, 2016

@sandras, I would like to introduce you to a new member, @2011panc. She also received a pancreas transplant. I think that you two might have a lot in common.
Rosemary

sandras

Posted by @sandras, Nov 15, 2016

Sure! Hello I am a pancrease recipient 2013. When did you have your transplant?

2011panc

Posted by @2011panc, Nov 16, 2016

I received my transplant January 2011 in the middle of a traffic-stopping blizzard. I didn't care about the weather but it is an interesting comment for people to hear.

2011panc

Posted by @2011panc, Nov 16, 2016

I have found that living with a transplant successfully changes you far beyond the actual physical and medical things we must do. Has anyone else noticed a change in your mental, spiritual or emotional self? Are you more or less: patient? understanding? short tempered? calm? forgiving? precise? picky? complimentary? thankful? resentful? Are your emotions the same, different, more pronounced or muted? I am just curious about how other people have reacted. You may have no other forum to discuss these issues and I would welcome any input from anyone.

rosemarya

Posted by @rosemarya, Nov 17, 2016

@2011panc these are fabulous questions to ask of our Transplants group. In fact, I think they are so important that I would like to ask you to repost your message as a New Discussion. Here's how:
1. Go to the Transplants group page https://connect.mayoclinic.org/group/transplants/
2. Click START A DISCUSSION.
3. Write your title and message.
4. Click CREATE DISCUSSION.

What are your thoughts? I look forward to talking about this! Rosemary

Possible title something like: Mental, Emotional, Spiritual Changes after Transplant

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